Well, dear friends, I guess I wasn't emotionally prepared for a radiation treatment! Maybe I'm just tooooo sensitive/emotional, but boy, when they put that mask on Tom, I nearly lost it! I didn't get hysterical or anywhere near dramatic, but I certainly had tears pouring down my face!
He seemed perfectly calm - - - how does ANYONE make it through those sessions without wanting to scream? I'll admit to being claustrophobic, but wouldn't anyone get that sensation with the mask?
Anyway, I survived - as did he! The good news is that the radiation doc said he felt the chemo has done about an 80% job of getting this thing on the run, and that the tumor should respond very well to the radiation

It is late, but I wanted to record this 'sensation'........
(Tom refused to take the last day's worth of Xeloda today because his skin is red and fiery........I couldn't get a response from my call to the chemo nurse to find out if he'll be OK with missing those doses...
Night all..
Nicki

Oh Nicki, bless ya'lls hearts. You have only just begun. As for that mask, well how else can one put it, you do what you have to do. I don't think there is a soul that enjoyed that part of radaition. Well any part of it now that I think about it. I have been praying for ya'll. You need to take care of you too, don't forget that..For now I will say good-bye and a prayer for ya'll. Always Miss Vicki

Nicki,

With all that I've read on this site about the offensive masks, I guess I'm glad that in the "old days" when I had radiation they weren't using masks. It was certainly bad enough without them.

Please be sure Tom stays focused on nutrition -- it's a real challenge as radiation goes along, but it's also a critical part of getting well again.

Cathy

Nicki,

I guess I was lucky. No one ever asked if I wanted to go in with Heather when she had her RAD. I stayed in the waiting room most of the time, so I never saw her with the mask on. I did see the mask after her treatments were done, though and it's probably a good thing that I never saw her with it on.

As for the Xeloda, I don't know if skipping the last dose is a big deal or not. I can tell you that we were told up front that Xeloda could cause skin problems. I think I remember you mentioning that Tom has had some problems with red and splotchy skin. The Xeloda causes dehydration, which in turn causes the skin problems. The chemo nurses recommended using either Udderly Smooth or Bag Balm. We used Udderly Smooth....just rubbed it in several times a day. They said the palms of the hands and soles of the feet usually are affected the most, so we concentrated on keeping those areas well moistened with the cream.

I believe you also mentioned that Tom has had some tingling in his toes and fingers? I found the booklet we were given when Heather started on Xeloda. It calls this condition hand-and-foot syndrome and says to let your doctor know ASAP if you experience it. It usually starts with numbness, tingling, redness and swelling. It can progress to painful swelling and redness and can sometimes cause blistering and peeling of the skin. However, when caught early, it is easily treated. I certainly would let the docs know about the tingling/numbness before Tom starts the next round of Xeloda.

Rainbows & hugs,
Rosie

Like Vicki said, you just do what you gotta do! For me I listened to music fairly loud, didn't really matter much what. It made the time go quickly most of the time. The first week we tried Amofostine, which did not go well at all. I threw up 2 different times that week during radiation! You've never seen rad techs move so fast to get that mask off & my face in a bucket!! They really cared & probably weren't all that excited about the thought of a puke sprinkler in the rad room!! HaHa!! Tell Tom he can do it!

Hey Nicki,
You guys surely are in my prayers. Dan had 7 chemo treatments and 41 rads. I hope you guys decided on the PEG...Dan could not have made it w/o it. He ate and did well until 3 weeks in, and then overnite it happened...he could not eat a thing or even drink water. That day and for 5 months he took nutrition only thru the PEG, nothing by mouth. It was a rough haul, but Dan got the max rad to four places and it was full field, not IMRT (which probably made it worse). With pain meds, make sure you ask the docs for some strong meds for constipation. Dan really had a few days of horrible constipation that we had a hard time getting under control. Docs didn't mention it beforehand, so make sure you ask and get ready for that! Anyway, hang in there and keep praying...it's what got us thru along with some very loving friends!
Deb

Nicki, all totaled I guess I went through about 110 of those lovely sessions under the mask, counting both occurances. Hate to say it, but one just kind of gets used to it after a while. I either slept or tried to think up orchestrations to the sound the IMRT colimiter leaves were making a they did their thing.

I'm one of those that did this without the PEG, not a big deal the second time around since they only did my neck and I didn't have much pain except for a slightly sore throat for a couple of weeks, but first time around I wound up in the hospital the last week getting fed through IV as they were nuking my tongue as well as neck.

Suggest if they are going anywhere near his mouth he do the PEG, but try and wean himself off as soon as possible.

Good luck to you both, You will find that time passes, things will get better.
Bob

Nicki, I think this is one of the areas where it is worse to be the caregiver than the patient. I am not claustrophobic, so had no problem with the mask, and like everything else, after one does something a couple of times, it gets to be routine. I, too, slept a lot and many times the techs had to wake me up. If for some reason I had to choose to have surgery, rad, or chemo again, I would choose rad because it was by far the easiest. You and Tom will get though this just fine.

Hi Nicki

Soon you'll be writing 34 down, 1 to go!

I didn't mind the mask either. It may look frightening but wasn't painful. I saw it as a positive tool in my treatment. Used my mind to visualise a clean healthy throat while the ray was on and to take me away in between times.

I suspect your day may have been harder for you than your husband. Think of all the malignant cells which are now history.

Best wishes to you both for successful treatment, with love from Helen

Nicki,
Like Bob, I slept through a lot of my treatments. As I lost weight the mask loosened up a little. It was pretty tight at first. I did fear getting sick in the mask but it never happened. It really wasn't a big deal. I WANTED to make sure that they accurately hit the target and the mask guarantees that.